CDC 2012 Fun Run

This year's CDC Fun Run was a blast. 

Here is Team 1 running in the Wheels division of the race: Roger and Juliana!

And Team 2 - Marisa, Kristy, Olivia and Faith

 And they're off!  I have to say that a year really makes a difference.  I rememeber running this with Olivia last year.  She was 3 and a total wuss.  Granted she was only 3 years old, but she tired out before we hit the first 1/4 of a mile.  This year, a different story.  She was determined to win.  I had gotten up in the middle of the night with Juliana and Olivia rolled over and said, "Are you taking her out of here so I can get some good rest and win my race?"  Yes my dear.  Then she woke up in the morning and told me she needed pony tails today because in her words "Hair down, slows you down!"  All she talked about was how she was going to win that trophy.  I thought she has a fighting chance.  Although she has Roger and my genes (which don't include the running genes), she is one of the older kids in the class, and she is taller than them all, and she really wants to win this year.  They give out a trophy to the first place girl and boy of each class.  So she only has to be faster than the girls in her class.  Please Jesus, just this once, let her little legs carry her to that trophy she wants so badly.  Well, not so much.  Unfortunately she didn't even make top 3 of her class.  She was kind of bummed, but to told her how proud I was of her.  How much she grew in a year, that last year she cried the whole mile and this year not so much as a tear.  I really was so proud of her.

 Here is Juj catching up with her favorite Mrs. West.

 And here is Juliana and Roger, winning 1st place in the Wheels division.  Yes of course we were happy for them, but it was kind of like salt in Livi's already stinging wound.

 And this has to be one of my favorite pictures in a long time.  I took it.  Doesn't it remind you of the family portraits you took in the late 70's with your parents. It's like Roger with his 3 daughters.  Love it!

Costumes, Cupcakes and Carving

This year I was floored that both of my little princesses wanted to be witches.  And not the cute frilly witches, they wanted full on green face with warts!  As much as it shocked me, I also loved it!  Juliana had a dress up day the Friday before Halloween at school.  It had to be a book character of course.  So I kind of forgot until the Wednesday before the dress up, so I asked her if she would possibly consider going at Minnie Mouse to school since we already had that costume and we have plenty of Minnie books.  She looked at her computer and said "NO!".  I pleaded with her, "come on, we have no witch costume or witch book.  You can still be a witch for Halloween, just be Minnie at school."  To which she responded "NO!"  So I said, "Ok, we will figure this out.  I will find a costume and a book"  Then, in sweet and selfless Juliana style, she responded with her computer, "I'm sorry, I was just kidding.  I'm sorry."  To which I said, "NO!  I am glad that you are telling me you want to be a witch and I am going to make it happen." 

This is her on that Friday.  She was so excited with her costume.  I was a little nervous about the face painting, especially since when I dropped her off no one else had their face painted, but she was so excited.  They had a costume parade, which Juliana the witch was the leader of!  Unfortunately I didn't get to see it because I was at jury duty that week, but I was told she was nothing but smiles and giggles that day.

 Then that weekend we had our annual pumpkin carving party.  Here is Juliana making cupcakes with Ashley.  Do you think she likes cupcakes!!!

 

 And here is Liv at the Pumpkin Party.  She makes one spooky witch!

 Here is Emma - our favorite little elephant

 And Tanner, the best Mailman EVER!!!!              

 

 

 For those of you that know, this was our 9th Annual Pumpkin Carving Competition.  And 9 years ago, it truly was a Super Competitive Event.  We would have anywhere from 9-15 pumpkins entered in the competition and everyone fought to win the coveted Golden Pumpkin Award.  It remained this way for about the first 4-5 years of the competition.  But it's changed now.  What had changed is that we are old and we have children.  So what started off as a fight-to-the-death type of competition ended this year with 3 pumpkins entered and one not finished.  We spend way more time playing with the kids and baby and very few time carving or judging.  So here are the awards from this years' competition:
The Award for a Hot Mess of an Unfinished Pumpkin goes to  . . . . . . . . . . . Chuy Loucks

 Clint won the Golden Pumpkin and Ashley won the Golden Kitty Award.  Unfortunatley we didn't even take a single picture of the actual pumpkins, but trust me on this one, they were the winners!

 The Award for the Cutest Mailman Ever goes to . . . . . . Tanner

 And one last shot of Elphaba the witch!

One Last Stop





And we couldn't leave without seeing the Gutierrez family.  They will always hold a special place in our hearts.  Love you guys and hope you will make it to Texas sometime!

 And on the way back Liv and Omi decided they wanted a picture with a street vendor.  Well, by the looks on their faces I think Omi wanted it more than Liv.

 But Liv was up for a picture with the Statue of Liberty.  My concern is that since we never got to see the real one, I think she thinks this is the real deal.  She told everyone when she got home she saw Lady Liberty.

And from here we were on our way home.

9/11 Memorial

After the Blue Sky Girls event the Brooks', the Dalton's and the Shuberts took a field trip to the 9/11 Memorial.  We started affectionately calling ourselves the wheel chair brigade since it's pretty difficult to navigate through a very busy NYC with three wheel chairs.  And it is quite a process to get in there.  Even though we had tickets to get in at a certain time, the line was ridiculous.  So we discovered THE ONE AND ONLY benefit to having Rett Syndrome and a wheel chair is that you totally get to cut the line.  We went straight to the front.

It is truly an amazing sight.  Liv kept asking me what this was and why we were here.  I'm not even sure what I said to her but a stranger, that was apparently listening to our conversation, said "that was a perfect explanation." 

 Lucky that we got to cut the line because about 20 minutes after we got in, Juliana started crying.  I think it was her tummy, so off went the Wheel Chair Brigade in search of restrooms.  It took us some time, but we finally found some decent bathrooms in the Winter Garden Atrium. 

 This cute chick next to me is another Emma and she also has Rett Syndrome.  It's really cool because Emma can walk!  So Juliana and I were sitting on the steps and Emma got out of her seat and came over and sat next to us.  She is incredible.

 

 

 After that adventure we headed to The Stand Four. If you don't know about this place, they were on some foodie network for having the BEST Toasted Marshmallow Milkshake.  We had the pleasure of coming here the last time we came in with our good friends Gina and Rob, but Jen had never been.  It was her dream to have the mystical milk shake (and yes friends, you can also get them "adult style" with vodka!)  So finally her (and Mark's) wish came true!  And yes, it's every bit as delicious!

Blue Sky Girls

So after a day full of information from all of her wonderful doctors, it was time to take part in the the 2nd Annual Blue Sky Girls Event in New York.  What is the Blue Sky Girls event?  More about that in just a second.

Here is Roger and Olivia grabbing some breakfast at the Hilton before heading over

And here is Omi and me doing the same.

And then off to the Tweed Courthouse in NYC.  So the event is the idea of the wonderful Dr. Djukic.  She calls it "Blue Sky Girls" because she honestly feels like the sky is the limit for these wonderful little girls.  What was once thought of as a death sentence, to her has so much promise for treatment and one day a cure.  So we all gather together to spread awareness and to ask for one very important thing, to give these girls the same opportunities for education as all kids. "Do not confuse my silence for lack of cognitive ability". 

So she gathered New York's finest - the NYFD to help with the event.

This is our friend Emma.  Her mom, Jen and I have been friends for years.  I had the pleasure of meeting Jen at a training that Dr. Djukic held about 2 years ago, but this was the first time our kiddos could meet.  We were so excited!

Here is Emma giving Juliana a kiss.

And this is Emma's Sister Sarah.  Her and Olivia were fast friends.

And then it was time.  Dr. Djukic took the stage and gave this amazing speech.

Cliff notes to my favorite parts of her speech - 1. That despite all the people present, her speech is directed at our girls. 2. When she introduced the Fire men and said that "those who can will climb the stairs and those who are unable will be carried up by the NYFD and we will transform their wheel chairs into princess thrones. 3. And the part at the end where she reads a description of Rett Syndrome written by a girl with Rett Syndrome. 

All three parts made me cry and also feel so proud to be Juliana's mom!

And here is Juliana climbing all 30 steps in front of the court house. If you haven't watched the video, Dr. Djukic says the stairs are symbolic.  Climbing stairs move us forward and upward - which is where our girls are going.  We were so proud of her.

And then at the end balloons were released.

Some balloons like this one said "Anna Banana" on them.  In memory of our sweet Anna.  She is always in our hearts.  She was a fighter and I would like to think she is Juliana's angel.

Dr. Djukic - you have a very special place in our hearts.  Thank you for all your hard work and your passion.

Another incredible lady - Monica Coenraads, Executive Director of the RSRT. 

And these are the incredible siblings.  Alli and Sarah both have sisters with Rett Syndrome.  It is amazing to me, (1) how quickly this trio bonded and (2) how mature they all are.  Sisters Rock!

Here are the sisters taking their turn at the steps!

After that it was time for lunch.  Juliana was so happy just hanging out with Emma.  And I love that Emma chills out with her leg propped up.